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Stress Patterns in Parents of Chronically Ill Children

Am Fam Physician. 2005 Aug 15;72(4):690-693.

Chronic childhood illness impacts the patient and the patient’s parents. Researchers have become increasingly interested in understanding how people cope in response to stress from an abnormal life situation. Previous studies have found that parental distress increases after a child’s cancer diagnosis, but that the symptoms usually decrease over time. A child’s diabetes diagnosis also causes parental distress (usually worry and uncertainty about the future), but research on long-term effects has been inconclusive. Boman and associates studied distress levels in parents of chronically ill children, focusing on disease type and long-term effects.

The study included two groups: parents of children with cancer and parents of children with diabetes. The authors sent potential participants multidimensional, self-report questionnaires (developed to assess 11 disease-related distress symptoms), and a return envelope. The cancer group had a 78 percent questionnaire return rate, and the diabetes group had a 69 percent return rate. Parental distress data also were collected from a control group that included parents of children 16 years or younger who were randomly selected from the community.

Final analysis included 675 parents. Both illness groups had significantly higher global distress measures as well as more subcategory symptoms compared with the control group. Global distress was significantly higher in the cancer group compared with the diabetes group. Parents in the cancer group also reported having more negative feelings, loss of control, anxiety, depression, and physical and psychologic distress compared with parents in the diabetes group. Global distress decreased over time in the cancer group. Global distress did not decrease over time in the diabetes group, and the level of uncertainty increased.

The authors conclude that severe distress occurred among parents of chronically ill children. Diabetes appeared to have a constant or increasing psychosocial impact over time, whereas distress variables caused by cancer generally decreased over time. The authors conclude that physicians should focus on initial psychosocial issues in parents of children with cancer, but that long-term psychologic follow-up is more important in parents of children with diabetes.